International Waldenstrom's Macroglobulinemia Foundation (IWMF)

What International Waldenstrom's Macroglobulinemia Foundation (IWMF) does

The International Waldenstrom's Macroglobulinemia Foundation (IWMF) is a US 501(c)(3) nonprofit patient advocacy organization founded in 1996 and headquartered in Sarasota, Florida, with a mailing address in Chicago, Illinois. It is the only global organization exclusively dedicated to Waldenstrom's Macroglobulinemia (WM), a rare, slow-growing non-Hodgkin lymphoma affecting 1,500–3,000 newly diagnosed patients per year in the United States. IWMF serves four constituencies: WM patients, caregivers and family members, healthcare professionals, and WM researchers, providing disease education, peer support, financial assistance, and research funding.

IWMF's product portfolio is a suite of programs rather than a unified technology platform. Core offerings include the quarterly IWMF Torch magazine, Waldenstrom's Weekly newsletter, a multilingual website (20+ languages), the IWMF Connect online discussion forums, the LIFELINE one-on-one peer support program, US and international support groups, annual educational forums (US and European), wellness programs (Yoga, T'ai Chi, Fitness, Relaxation/Meditation), a Directory of WM Physicians, clinical trial information, the WhiMSICAL patient registry, the NORD Travel Assistance Program (up to $1,500 per patient), and a Research Grants Program. Underlying technology is modest: a standard web platform for education and communications, with DonorPerfect used for donor management.

IWMF's business model is donation-driven. All services are provided free of charge to patients, caregivers, and clinicians; the organization is funded through charitable donations, the Accelerate the Cure Campaign, and the Ben Rude Heritage Society planned giving program. With 23 employees and a volunteer Board of Trustees, IWMF relies on grassroots fundraising, partnerships with peer organizations (Lymphoma Research Foundation, The Leukemia & Lymphoma Society, CancerCare, NORD), and institutional research collaborations with leading academic centers (Dana-Farber, Mayo Clinic) to deliver its mission.

Name

International Waldenstrom's Macroglobulinemia Foundation (IWMF)

Legal name

International Waldenstrom's Macroglobulinemia Foundation

Website

https://iwmf.com

Company type

Private

Operating status

Operating

Headcount range

11–50 employees

Short description

The International Waldenstrom's Macroglobulinemia Foundation (IWMF) is a US 501(c)(3) nonprofit founded in 1996 that exclusively supports patients, caregivers, clinicians, and researchers affected by Waldenstrom's Macroglobulinemia, a rare blood cancer, through education, peer support, financial assistance, and research grants.

Ownership category

akta.pro rank

Headquarters

HQ city

Chicago

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Others, Marketing or Sales, Technology or R&D

Distribution channels7 records

Marketing channels10 records

Core offering

The IWMF is a nonprofit patient advocacy organization that provides free education, support, and research funding for the Waldenstrom's Macroglobulinemia (WM) community. Its core offerings include the IWMF Torch magazine, wellness programs (Yoga, T'ai Chi, Fitness, Meditation), a Directory of WM Physicians, IWMF Connect online forums, annual Educational Forums, financial assistance, clinical trial information, the LIFELINE peer-support program, and a research grants program funded through donations.

Product overview

The International Waldenstrom's Macroglobulinemia Foundation (IWMF) is a non-profit patient advocacy organization that does not offer a unified technology product or platform. Instead, it provides a portfolio of educational, support, and research programs including the IWMF Torch magazine, wellness programs (Yoga, T'ai Chi, Fitness, Meditation), a Directory of WM Physicians, IWMF Connect online discussion forums, annual Educational Forums, financial assistance resources, clinical trials information, peer support through LIFELINE, and a research grants program. These offerings collectively serve patients, caregivers, researchers, and healthcare professionals affected by Waldenstrom's Macroglobulinemia.

Differentiator

Problem solved

Functional benefit

Products and services

• IWMF Torch Magazine The foundation's flagship magazine featuring articles, research updates, and patient stories related to Waldenstrom's Macroglobulinemia, published for WM patients, caregivers, and healthcare professionals.
• Wellness Programs Programs including Yoga, T'ai Chi, Fitness, and Relaxation & Meditation guidance designed to support physical and emotional wellness for WM patients.
• Directory of WM Physicians A searchable directory of physicians with expertise in diagnosing and treating Waldenstrom's Macroglobulinemia, used by patients, caregivers, and referring clinicians.
• IWMF Connect Online Discussion Forums Internet-based forum enabling WM patients and caregivers to connect, share experiences, and exchange information about living with WM.
• IWMF Educational Forum Annual in-person educational forum providing updates on WM research, treatment options, and patient care from medical experts for patients, caregivers, and clinicians.
• Financial Assistance Program Resources and programs to help WM patients manage the financial burden of treatment and care, including travel assistance for second opinions and clinical trials.
• Clinical Trials Information Comprehensive information about ongoing clinical trials for Waldenstrom's Macroglobulinemia treatment.
• LIFELINE and One-on-One Support Peer support program connecting WM patients with trained volunteers who have personal experience with the disease.
• Research Grants Program Funding program supporting scientific research toward finding better treatments and a cure for WM.

Quantifiable outcome

• 14 to 16 years or more median survival for WM patients
• +1 more outcomes

Segments4 records

Ideal customer profiles4 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Seven partnerships are on record, tiered core and secondary.

• Lymphoma Research Foundation (LRF)coreStrategic or Co-development PartnerThe IWMF partners with the Lymphoma Research Foundation (LRF) to provide educational events that include WM. As part of this partnership, the IWMF may share member/constituent name and postal address (not email) with LRF so that members may be invited via mail to educational events. This collaboration extends the reach of WM education to a broader lymphoma patient community.
• The Leukemia & Lymphoma Society (LLS)coreStrategic or Co-development PartnerThe IWMF partners with The Leukemia & Lymphoma Society (LLS) for educational events that include WM. The IWMF may share member/constituent name and postal address (not email) with LLS for educational event invitations. LLS also provides clinical trial support services that IWMF refers patients to, and both organizations collaborate on patient education.
• Cancer*Care*secondaryStrategic or Co-development PartnerThe IWMF partners with Cancer*Care* for educational events that include WM. The IWMF may share member/constituent name and postal address with Cancer*Care* for educational event invitations. Cancer*Care* provides support services including counseling, support groups, and financial assistance that complement IWMF's offerings.
• National Organization for Rare Disorders (NORD)coreStrategic or Co-development PartnerThe IWMF has partnered with NORD to provide a travel and lodging assistance fund for individuals traveling for second-opinion or WM diagnosis confirmation appointments, and/or travel related to clinical trial eligibility screening or first clinical trial visit. This program has an award cap of $1,500, covering economy class airfare for the patient and one companion, plus up to two nights of hotel accommodations. For those driving two hours or more, a flat $200 reimbursement for mileage, tolls, and parking is provided.
• Dana-Farber Cancer InstitutecoreStrategic or Co-development PartnerDana-Farber Cancer Institute is home to leading WM researchers including Dr. Steven P. Treon. The institution has established the Robert F. Tannenhauser Chair for Waldenström's Research, demonstrating deep commitment to WM research. Dana-Farber researchers collaborate with IWMF on research grants and provide expert guidance quoted in IWMF materials.
• Mayo CliniccoreStrategic or Co-development PartnerMayo Clinic, home to researchers like Dr. Stephen M. Ansell and Dr. Morie Gertz, is a key research partner for IWMF. Mayo Clinic researchers receive IWMF research grants and contribute expert content to IWMF publications including the Torch magazine and fact sheets.
• Patient Advocacy Partners (Global Affiliates)coreChannel Partner/ Reseller/ DistributorThe IWMF maintains a network of Global Partners (international affiliates) that provide localized WM education, support, and resources in their respective countries. These partners extend IWMF's reach internationally and adapt content for local audiences. The IWMF shares publications about WM from these Patient Advocacy Partners.

Scale indicators4 records

Recent moves6 records

Expansion highlights5 records

Direct peers

• Cutaneous Lymphoma Foundation: A nonprofit dedicated to cutaneous lymphoma patient support, education, and research. Comparable in being a disease-specific, patient-led lymphoma advocacy organization of similar scale to IWMF.
• Lymphoma Research Foundation (LRF): A US nonprofit focused on lymphoma research and patient education, including WM as part of its broader lymphoma portfolio. IWMF and LRF run joint educational events and share mailing lists, making LRF the closest functional peer in the lymphoma advocacy space.
• MDS Foundation: An international nonprofit supporting patients with myelodysplastic syndromes (MDS). Closely mirrors IWMF's structure — a rare blood-cancer community supported by a small central team with global centers of excellence.
• CLL Society: A US patient-advocacy nonprofit dedicated to chronic lymphocytic leukemia (CLL). Comparable to IWMF as a single-disease, education-and-research-focused nonprofit serving a rare hematologic malignancy community.
• Multiple Myeloma Research Foundation (MMRF): A disease-specific nonprofit accelerating multiple myeloma research and patient support. Operates a near-identical patient-advocacy, research-grant, and patient-registry model as IWMF, making it a strong structural analog for a rare hematologic malignancy.
• International Myeloma Foundation (IMF): A global patient-advocacy and research organization for myeloma with international affiliates and multilingual programs. Highly comparable to IWMF in operating model, global footprint, and rare hematologic cancer focus.
• Cancer*Care*: A US nonprofit providing counseling, support groups, and financial assistance to cancer patients. Co-hosts WM educational events with IWMF and offers overlapping supportive-care services.

Others

• National Organization for Rare Disorders (NORD): A US umbrella organization for rare diseases that partners with IWMF to administer the travel-assistance fund for WM patients. Not a direct competitor; functions as an enabler and platform provider for IWMF's financial-assistance program.
• Waldenstrom's Macroglobulinemia Community at LLS: LLS's WM-specific patient education and clinical trial navigation resources. Not an independent organization, but represents a directly competing program surface for WM patients and a potential channel for donor attention.

Broad incumbents

• The Leukemia & Lymphoma Society (LLS): The largest US blood-cancer nonprofit, covering leukemia, lymphoma, myeloma, and other blood cancers including WM. LLS provides clinical trial support services that IWMF refers patients to, and both organizations co-host WM educational events.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat5 records

Key risks5 records

Key highlights7 records

Customer concentration

• Xx.com/WMIWMF
• YouTubeyoutube.com/user/IWMFVideos
• Facebookfacebook.com/waldenstroms.support
• LinkedInlinkedin.com/company/international-waldenstroms-macroglobulinemia-foundation
• Instagraminstagram.com/wmiwmf

Revenue estimate

Valuation estimate

Number of profiles

Profiles2 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about International Waldenstrom's Macroglobulinemia Foundation (IWMF)